Super Bowl...

Two points about the Super Bowl (and one extra):

One...loved Beyonce...

she was absolutely beautiful and she has SUCH a great voice!

I don't care that it was on a voice track...

she can SING!

Yes...she had on a sexy outfit....

she's Beyonce...if I looked like that, I would wear that outfit every day!! LOL!!

And I thought the special effects were amazing!!

And the commercials rocked!!

This one is my favorite.

I literally had to sit down because I was laughing so hard when Mr. Goldblatt stuck his nipple on the window of the restaurant.

I'm STILL laughing!! :)

I have visions of this being the group I hang with when I'm old.... er.

My friends are pretty freaking fun and crazy...

I'm sure we try to top 'em!!

Here's the commercial if you missed it!

http://www.youtube.com/watch?v=KvxZcULxfKw

Oh...and YAY RAVENS!!!!!!!!!!!!!!!

That was a GREAT game!

And the AFC wins!! :)

WOOT WOOT!!

Get ready for 2013 baby...

Chiefs are coming back!!!!

LOVE my Chiefs and I can't WAIT for fall!!! :)

These guys have been HUGE supporters of our foundation and have made SUCH a difference for our kids!

I can NEVER thank them enough!!

Not the year they wanted for 2012 either, but....

EVERY day is a new day and offers new HOPE and

I BELIEVE in my Chiefs!! :)

Kevin Boss, Matt Cassel, Dustin Colquitt, Ryan Lilja, and Ray Farmer signed autographs with our kids at the walk this past summer! Derrick Johnson has done several things for our kiddoes!! And 12 starters did our 2012 calendar with 12 of our heroes!! This was not an "official" Chiefs project...this was something they did on their own because they CARE about our kids with cancer!!

 

TAKE THAT cANCER!

 

LOVE MY CHIEFS!!!!

 

Both on and off the field!!

This is Matt Cassel who was at our walk this past year signing autographs with our kiddoes!

I LOVE the Cassel Family!! They are AMAZING people!!

 

I will try to blog about how they reached out to support Braden this week!

 

They ROCK, period!

Zachism Day, #4...

Saturday Zachism Day...

Each Saturday, I will share a "Zachism" with you.

Zach is our nine year old son, and he makes me laugh every day, without trying!

He is my little blonde mini-me!! :)

Here's today's with a bonus Braden moment! :)



The other day, out of the blue, Zach and dad had this conversation:

Zach: "Okay...here's a quiz...

what kind of sauce is used in making pizzas?"

Brian: "Pizza Sauce"

Zach: (with a VERY genuinely encouraging voice): "NIIIIIIIIIIIIIIIIIIIIIIIIIICE!!!!! Really well done!"

Insert eye roll and sigh!! :)











Last week, Braden's class made some really cute Valentines Day decorations.

She handed Braden's back to him and asked him to draw two eyes on it.

A picture is worth a thousand words:

Have a great weekend!!

:)

Brian was right...

So it turns out that the cat thing might have been a good decision.

Sigh.

The boys usually fall asleep in our bed, and then we (we meaning Brian) carry them to their rooms afterwards. 

They have to have the cat in the bed snuggling before they go to sleep.

It really is sweet!!

First thing in the morning, they are all over the poor kitty...he doesn't get a moment's rest.

He really is very sweet about it, he just dangles while they carry him around! 

AMAZING!!

I pick them up from school and the first thing they ask is "how is the kitty?" and then they are all over him again until they are asleep.

The cat likes to lick Zach's head...

I cringe!

My favorite thing about this cat (other than the fact he is sweet and patient and my boys love him) is that he plays....

fetch.

I'm not kidding.

He gets this toy (a very sweet friend gave it to him...it's a yellow bird that used to be on a stick but he got it off) and brings it to you when you are sitting.

Then he sets it down and meows.

You throw it, he gets it, and brings it back and does it again....

and again and again and again!! :)

When he's out of food, he comes to get you by meowing and keeps meowing until you follow him to his food bowls, where he shows you...

"I'm out dude!"

I think he's part Lassie!!

He's not like any cat I've ever met!!

And I love how much my boys love him!!

Last night, he was sleeping on top of the couch and Zach covered him in his favorite blanket.

He doesn't share that blanket with anyone and it is always near him.

Now THAT is love!!

Share your favorite blankie with someone you love!

Sure would be a wonderful world if we ALL did that! :) 

Vanity...

I'm not a girlie girl.

I'm a country girl who grew up shoveling horse manure and shooting my Daisy bb gun. :)

Occasionally, I like to get my "girl on" and dress up, do my hair and make up, but

the majority of the time, I'm most comfortable in a t-shirt and jeans, with my hair pulled back in a barrette.

SO when the ladies from the Art Bra Gala called...

and asked me to be one of their breast cancer survivor models,

(and let's pause here and discuss what that means...makeup, fancy hair, and me wearing a BRA modeling while walking down a runway)...

I said no.

Initially.

And then this sweet lady went into her pitch and dangit...

it's SUCH a great cause so...

I said yes.

This Gala benefits uninsured or under-insured breast cancer patients and many of my dear friends are involved.

I truly would like to do something to help and this organization is awesome!

And I've never done anything for breast cancer...

(and I've never worn a bra while walking down a runway....holy crap!)

SO...I'm doing it.

Lord help me!!

For the past several years, since the cancer mess began, I have not taken care of myself.

I have gained about 15 ugly pounds that need to go...

and I have aged,

I have a knee that won't bend, my balance with my MS is laughable (my neurologist swears she will jump to my defense if I ever am asked to do that sobriety "walk in a straight line" thing), my feet feel like I'm walking on broken glass all the time, and

I fear for the safety of those around me in high winds...

...one direct hit from my waggling arm fat

and somebody is going down!

After hanging up with that sweet lady, I immediately had a "what did I just do" moment.

I'm not even trying to be beautiful or thin,

but I am trying to knock off some of the flappiness in the arms,

legs,

tush, and

gut.

(I think I'm stuck with the turkey wattle) :)

SO...I started a "diet" and "workout" routine thingie dealer bopper program...

BLECK!!!

I used to eat like a bird and run all the time.

I was a size 4, and sometimes those were baggy.

Then I started enjoying cooking and I quit working out.

I'm not a size 4 anymore. :)

I have never, ever considered myself to be a vain person.

My morning "get ready" routine is 10-15 minutes long...

SERIOUSLY!!

I'm quicker at getting ready than most guys!!

So this diet is no sugar and sodium for 4 days, then just be sensible.

I'm on day 4.

It sucks.

I want a big piece of frickin' pizza soooooo badly...

and a hot fudge sundae to wash it down....

with seven or eight glasses of red wine to top it off!

I LOVE food!! :)

The workouts are "interesting".

Only 20 minutes, 3 times a week.

So I thought, PSSSHHHHHH...20 minutes, 3x a week,

I've got this...

...easy peasy!

The sales pitch didn't mention that the little perky instructor chicks,

are actually Satan's spawn. :)

Sure, they seem sweet and peppy...

but they are EVIL! 

100% EVIL!!

Nobody warned me that this was a whacked out, SPEED version of Twister!!!

How the hell are you supposed to make your arms go that way while your legs go this way and you have to jump four times while crossing your feet and then lunge and...

don't forget to smile and breathe.

I'm still back on "put my right hand where?"

and she's already done 3 minutes of workout!!

WHAT?????

I have ended up tangled and on the floor more than once.  LOL!

I'm not kidding!! :)

And all day long, I stretch often so I won't get stiff...

...but still...

I stand at the bottom of the stairs and cry,

because I know I have to climb them to go to bed.

The couch downstairs is looking pretty good!!

Vanity ain't all it's cut out to be. :)

I needed motivation so I decided each day I work out, I will wear the shirt of one of my childhood cancer heroes...

When I get tired and want to stop, I just look at my shirt...

That takes care of it right away.

These kids go through WAY more than a 20 minute, evil twister workout from hell!

If they can do that, I can do this.

I have no idea if  this program is going to help me lose any inches or pounds....

it is possible that I will only lose my sanity and self respect (because evil twister is very humbling),

but I'm trying!!

I like shoveling horse manure and shooting my Daisy bb gun way better!

Shoot...I can even pee off the side of a fishing boat....

I've got MAD skills!!! LOL!!!

I just can't do that arm, leg, feet thingie the Evil Twister Chick wants me to do!! :)

well..not without falling! LOL

I'm a hot mess...

and they want me to walk down a runway...

in heels...

and a bra....

and look "perty" while I do it?!??!

LMBO!!!!!!

In all seriousness...

I can't wait!

It will be fun...

it's a GRAND detour and it is for a really good cause with some AMAZING people!!

But it is going to be freakin' hilarious when Momma D takes the runway!!!!

Hey Tyra...you might wanna check me out when I'm on the runway for your next Top Model?!?

or run away as fast as you can..

whichever!! :) 

Awwww....

It rained reallyhard in KC yesterday and

our sump pump broke during said hard rain.

SWEET!

Apparently, a part just fell off.

Freaking AWESOME!! :)

I noticed it when I opened the door to the storage room to get some things.

I caught it JUST in time because the water was inches from hitting the carpet in our basement.

I say just in time, but that "just in time" is relative. :)

Especially in a storage room

with lots of boxes

of important stuff you want to keep...

I suppose that's why you STORE them and don't ditch them. LOL!!

We have most things in plastic storage boxes up off the floor but there were things in there that I hadn't transitioned into tubs yet.

One of those things was a bag of the boys' clothes.

I hoard them... :)

I'm hoping that someday I will get someone to make a patchwork quilt for each of them.

I would LOVE that!!

WELL...

the bag got wet and so did the clothes inside.

I found so many treasures!!

Zach's first dress up shoes.

Braden's pajamas he wore during his initial chemotherapy.

Zach's footie jammies.

Christmas jammies from years before, shirts I still visualize them in when I think about those ages.

And keepsake shirts from detours.

I am such a sap when it comes to this stuff.

I know I need to get rid of them, so I now have a bunch ready to go to Good Will, but

they are so hard to party with!

I know, it's not the clothes, its the memories behind the clothes.

But to me, each item is a story, not just an item of clothing.

However, the reality is that they are JUST clothes and the memories will always be in my heart.

SO...I'm letting most of them go.

Why is this so hard?? 

It's stuff they could never wear again, and I probably have pictures of them in those things or they wouldn't be special.

Maybe it's hard because I realize my babies are growing up...

and while THAT is also a good thing...

it makes me a little sad.

I have loved every age...

and I have spend quality time with teens....

I know what's coming!

I'm cautious about enjoying those years! LOL!!

Some days, I just want to freeze time, enjoy it and soak in every detail.

That stupid sump pump incident gave me one of those days.

I suppose it was a detour...

and a life lesson.

Even when you think you are getting a soggy mess....

you might get a memory!

;)

Heroes....

UNBELIEVABLE!!!!!!

Abbott Labs said...

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Braden is going to get his ABT-751!!!!!

Let that sink in for a minute.....

It's taken me quite awhile to let it sink in myself!!

There are no words, no words...

No way to thank the Hero that saved our son!

I bet you are wondering who the Hero was that gave our son a chance for more time...

Well, as you know,

Initially, Abbott Labs was responding to me while I was waging my one-mommy war to fight for his full 3 years of ABT-751.

We were told on October 3, that CHOP had been notified that Abbott Labs had decided that they weren't going to fulfill their promise to give Braden his therapy of ABT-751 because they didn't have adequate supply,

and they weren't going to make anymore.

I can only suppose that they had no interest in spending a bunch of money making it

after all...

it's just an eight year old kid.

SO..they just decided to tell Braden that "unfortunately", after a certain date, they would not have supply of the medication any longer".

That date was June of 2013.

Let me just state what Abbott must have missed when they made that decision. 

Braden is not taking this drug just for kicks and giggles,

but to treat...cANCER!!

Yes, I admit that I can't prove that the ABT-751 is what is keeping him in a second remission, but they cannot prove it is NOT!

I'm not taking a risk with my son's life, we have fought too hard to get to this point!

BUT I couldn't do a damn thing about it because Abbott Labs just decided they weren't going to let him have it anymore.

They took their ball and went home!

They decided that he would just have to roll the dice and see if he lived or died.

But, they would NEVER even KNOW if he died.

How you sleep at night knowing you were not going to give a child the drug he needed to fight cancer??

How do you look at yourself in the mirror knowing you may be putting his life in danger just because it is no longer convenient for you to make his medication?

It's beyond my ability to comprehend such an act!!

It's simply inconceivable!!

There's a special place in hell for anyone who would do that.

After I had been waging my one mommy war against them for a bit (and at least holding my ground), I hadn't heard back after asking for an update,

and I started freaking out.

I knew the reality was that it was highly unlikely they were ever going to spend the huge amount of money needed to make enough supply for Braden to receive the 14 months of ABT-751 they were trying to take away from him.

It didn't benefit them, only Braden,

which, apparently, was not incentive enough for them to continue OR they would have never said they were going to stop making the drug that may be keeping him alive.

Our son had fought too hard and been through entirely too much for me to just let them quit without a fuss.

When I hadn't heard back, I was scared that was the end of "possible" and the beginning of "we're blowing you off".

And I started feeling a lot like Glenn Close in fatal attraction! LOL!!

So, I began thinking

(which is always dangerous) :) 

And I thought and thought about who I could ask to give me advice.

I know this one guy...

No, not Tony Soprano,

another guy... ;)

and I wondered if he might be able to help me figure out how to help Braden.

When I was a teacher, I had the cutest, sweetest little girl in my class. 

I seriously loved this child...her name was Kelsey.  She truly had the kindest heart and gave the biggest hugs! SUCH a sugar!!

Her parents were extremely supportive and involved in school, and I adored them as well!

She grew up and became an even more amazing young woman, and

her dad became a United States Senator.

Jerry Moran

US Senator from Kansas.

A few years ago, I learned that Senator Moran had been the first Congressman to sign a piece of legislation for our children with cancer, when he was in the House of Representatives.

He had also graciously spoken at a childhood cancer rally we held with the Team Will Cycling Group in KC.

Senator Moran had been an amazing support for our children with cancer and

he and his beautiful family had been hoping and praying for Braden since he was diagnosed.

So I reached out to Senator Moran and told him the story of Braden, Abbott Labs, ABT-751, what I felt was a huge injustice,

and I asked if he could help me help Braden.

He didn't even pause to think about it...he literally just swooped in and began working on it with his staff.

Jerry Moran is our Hero! 

Without his work and efforts, our son would NOT have gotten his ABT-751 supply extended.

I can't prove they would have said no, but it sure felt like it was going that direction.

Senator Moran didn't have to help us.

I would have understood, it's not like there aren't a few million things going on in DC right now :)

but, he did,

and he and his staff have worked TIRELESSLY to help Braden get his medication!

You can say and believe whatever you want about the political world, but I am here to stand strong at the top of Mount HOPE and shout to the world that Senator Moran is an incredible person who helps children with cancer, one of those being my son!

I will forever believe that Senator Moran's compassion and supportive voice are the reason Braden is going to receive the remaining supply of his ABT-751.

Senator Moran gave Braden a chance to turn 9

and 10,

and 11, and 12...

and beyond.

He gave him HOPE for a future!!

I don't know how you adequately thank someone for something like this.

Senator Moran called me in person to give me the amazing news and I have to tell you...

I had a hard time coming up with words to respond.

(soooo not me!) :)

I didn't think we would ever get this result,

I hoped,

but I'm not sure I believed.

I will never doubt the power of hope, prayer, and God again!!

Thank you to each of you who hoped and prayed for this result with us.

And thank you to Senator Jerry Moran for being our Hero!!

TAKE THAT cANCER!!!

Two Years, And One Day...

Today marks two years...

and one day...

since Braden was declared to be in a second remission!

TAKE THAT cANCER!!!!!

Huge day...

absolutely HUGE!

If you've been reading along, you have heard the story of what has happened since he was declared to be in a second remission.

There's 3 years more story before of that stuff,

and it's equally filled with "Seriously!"  moments...

Seriously! :)

Well...yesterday was a day of celebration and DETOURS!!

So we all detoured, first separately, then together!

Zach and I headed out for a cooking class!

He's a huge foodie..yes, he's nine, but he loves to cook and create in the kitchen! :)

His "mixes" require much supervision though...the boy would throw everything in the pantry in a dish. 

I think it's because he's a boy... LOL!! :)

We play "Chopped" at home quite a bit and one time his basket was:

(cue the dramatic music please...

and....hit it Ted Allen....)

Vanilla pudding powder mix

Milk

Nilla Wafers

and...

Bananas.

You can probably guess what I thought he would make,

BUT...you would be wrong!

He made a vanilla pudding, banana puree sauce with a cookie/cake made from pulverized nilla wafers and pantry ingredients.

It wasn't awful!  :)

So we took a class at the KC Culinary Center in downtown Overland Park..it was a BLAST!

It was a SuperHeroes class and we made 1-2 Punch, Hulk Juice, Iron Man Meatballs, Spiderman Spaghetti and Captain America Patriotic Parfaits...

We had so much fun he wanted to make it for dad for dinner so we went to the store and did just that!

And it was just as yummy at dinner.

Again.

Twice in one day...but he was VERY happy so it was worth it! :)

I heard about a million Zachisms during the day,

but the funniest one was when we were eating and talking about the ingredients in the meatballs.

They were made from ground turkey.

He suggested we call them "turkey balls" instead.

I thought Brian might spit his food out, he was trying so hard not to laugh out loud. :)

I told him we should stick with meatballs.

Oh my sweet little blonde mini me.. :)

Braden got to spend a good chunk of the day with one of his favorite people in the world...Miss Fuller (who got married and is now Mrs. Bradley but somehow...I don't think she's ever gonna be Mrs Bradley to him)! :)

She took him down to the College Basketball Experience in downtown KC...

It is his FAVORITE place on Earth.

Basketball is Braden's love...well next to his incredible teachers and friends at school...

He shoots hoops for at least two hours a day outside when the weather allows,

and on bad weather days, he shoots inside for a really long time!!

It got him through bone marrow transplant when he was three.

Transplant is so painful you can hear kids screaming day and night.

When the nurses would hear Braden scream, they would come running to the door to check on him and leave cracking up because...

...he was screaming because he just made a good shot!

"SLAMMA JAMMA" was his first really long multi-syllabic utterance!! The MLU rocked, but the verve in which it was delivered was...

...priceless!! :)

During transplant, he got up out of bed and played basketball every day, but two.

That is FIERCE!!!

I know I'm his mom, and therefore EXTREMELY biased,

but seriously...

THAT is FIERCE!!!

And that distraction and need to play is what got him released about 3 weeks after admission.

Again...

FIERCE!!

TAKE THAT cANCER!

So he got to do his favorite thing too.

And dad coached wrestling at a kids' tournament...his love too.

And then, we all sat around, completely stuffed, watching Bubble Guppies and Zach and Brian played checkers and chess.

I really don't think a day could be more perfect!

2 years ago, they said we wouldn't get this....

and it was a lovely, wonderful day of detours....

EVERY day is a gift!

FAITH is a powerful thing...

so is HOPE!

One more time....

TAKE THAT cANCER...

In Zach's words, "Braden just PONED you!!!"